No one to turn to...

[phaliscak]

Hi everyone,

I am still having problems finding someone who is in the same situation as my son Michael. Right now he might be developing this thing called a deformity of the glenohumeral joint. We are going to get a second opinion from Dr. Waters in Boston on May 1st, but I sometimes feel lonely when I look for advice. I feel like I don't have anyone to relate to who has a child with both leukemia and Erb's Palsy. It is frustrating because I want to know so much about what happened to other children and what their parents did in their decision making. Idealy I would love to find a childhood cancer servivor who also has BP since birth as well as someone who has a young child going through what I am going through. I have tried the message board for childhood cancer, but can find no one. It is either one or the other never both. If Dr. Waters thinks he needs surgery it will be increadably risky because of his immune system being too low and the fact that he is allergic to most if not all antibiotics. His oncologists want to wait until he finishes treatment, but that won't be until Nov. 2003. I don't know what to do. Some argue that his life is more important than his arm, others argue treat the arm and change his chemo protocol. Problem is, the chemo protocol is what works to keep him alive. This is were I feel alone. Can anyone here help? What would you guys do if you were in my shoes?

Sincerely,

Patty

[francine]

Patty - I wish I could be of more help and I know you are searching and searching to find someone in your position.

I think what I would do is contact every single bpi specialist in the country and ask them if they have a child under their watch that has both issues. I'd also contact the international specialists as well.

Also, I think I would probably sit down with a multidisciplinary team that included a couple of pediatric oncologists and a couple of pediatric bpi specialists and a counselor and hash it all out. Maybe if they worked together - talked together (is this a pipe dream?) maybe they could think of some way that both can be treated?

Have you dealt with TCH at all? (I'm sorry I forgot if you did or didn't). Well down there at the medical center is also the Anderson Hospital which if I have it right, is a well known cancer center.

Also - how about religious counseling? Are you a member of a religious community and can they help counsel you about this?

I will pray for you in hopes that you find clarity and will pray for Michael that he stays strong and get through all of this,
francine

[phaliscak]

Hi Francine,

Thank you . You always have great advice. Yes I have tried TCH before, but that was in the very beginning of treatment. Michael's oncologists just flat out said no under no circumstance is he to be treated for his arm right now because he was so newly diagnosed with leukemia and his life was on the line. Now that a year and half has gone by and Michael is now in what they call Maintenance the cancer is now in remission and the subject of his arm is coming up again. Now they are a little more relaxed, but I get the feeling that Dr. Waters is going to have to come up with some drastic reason serious enough to get the O.K. to do anything now instead of later. I just worry about the effects of later.

Thanks again.
Patty

[karen r]

My heart goes out to you, Patty. I think I mentioned, one other time when you introduced yourself, that there's a mom here in Ohio whose son had leukemia (in remission!) and has bpi. He too had to wait until the leukemia treatment was over before the bpi was addressed. I think he had surgery at TCH. Anyway, I know I asked the mom to e-mail you. I'll ask her again. Can you send me your e-mail address and a quick message and I'll forward it to the Ohio mom? I think her son is 9 years old now.
Karen
ohioerbspalsy@aol.com

[phaliscak]

Thank you Karen. I'll e-mail you right away.

Patty

[m&mmom]

Thoughts and prayers go out to you that you feel comfortable with any decision you choose to make. If I were in your shoes I wait on surgery.
Cindy

[TNT1999]

Patty, I'm sorry that you're feeling so alone in your situation. Have you ever met Dr. Waters? It sounds like you haven't yet. I would just like to say that he is a very kind who sincerely has the entire well-being of children in mind. Sure, he is Brachial Plexus specialist, but I'm confident in saying that when you explain the entire situation to him, he will not put the repair of Michael's arm ahead of his best interests overall. I believe that the surgery to repair glenohumeral joint deformities is basically like a Mod Quad type of procedure and that there is some room for waiting a little longer to do the surgery. Sure, the results might possibly not be as good, but would it really be worth the extra 5% or whatever usage to do it sooner rather than later? We had a potentially risky situation and Dr. Waters exact words to us were "No arm is worth a life."

I think Francine had some great suggestions as usual. Why don't you speak to Dr. Waters on the phone before you go and ask to have a Ped. Oncologist available for the evaluation. Either that or ask Waters to contact Michael's oncologist on the phone.

We'll keep you in our prayers for wisdom and strength to make these decisions. Take care. -Tina )